Natalie M Pool1. 1. College of Nursing, University of Arizona, Tucson, AZ, USA.
Abstract
INTRODUCTION: The establishment of caring relationships with racial and ethnic minority populations is challenging for many cancer care nurses. Nurses serving American Indian (AI) patients frequently encounter population-specific issues, yet their experiences are largely unknown. OBJECTIVE: The purpose of this study was to describe the meaning of the AI patient-cancer care nurse relationship from nurses' perspectives. The study included three objectives: (a) to describe the immediate experiences of nurses that have engaged in cancer care relationships with AI patients, (b) to identify the underlying structures of the AI patient-cancer care nurse relationship as described by nurses, and (c) to interpret the meaning of the patient-nurse relationship within the context of AI cancer care experiences. METHODS: This was an interpretive phenomenological study using a hermeneutical process for data collection and analysis of multiple, exploratory interviews. Thematic reduction was completed to explicate the fundamental structures of this particular relationship. Reduction of individually situated themes resulted in seven shared meta-themes including from task to connection; unnerving messaging; we are one; the freedom of unconditional acceptance; attuning and opening; atoning for the past, one moment at a time; and humanizing the inhumane. RESULTS: Nine cancer care nurses participated. Reconstitution of data and reflective writing suggested that the essential meaning of the AI patient-cancer care nurse relationship was expressed in contradictory yet simultaneous patterns for nurses. Nurses sought synchronicity with their AI patients despite their contextual differences and similarities, yet most lacked adequate cultural safety training. Being in relationship provided nurses great purpose within the universal human context of caring. CONCLUSIONS: Results contribute to the development of interventions designed to improve both the AI cancer care experience and the support and training of nurses. The mutually dependent nature of the patient-nurse relationship implies that strengthening and improving support for one entity may in turn positively impact the other.
INTRODUCTION: The establishment of caring relationships with racial and ethnic minority populations is challenging for many cancer care nurses. Nurses serving American Indian (AI) patients frequently encounter population-specific issues, yet their experiences are largely unknown. OBJECTIVE: The purpose of this study was to describe the meaning of the AI patient-cancer care nurse relationship from nurses' perspectives. The study included three objectives: (a) to describe the immediate experiences of nurses that have engaged in cancer care relationships with AI patients, (b) to identify the underlying structures of the AI patient-cancer care nurse relationship as described by nurses, and (c) to interpret the meaning of the patient-nurse relationship within the context of AI cancer care experiences. METHODS: This was an interpretive phenomenological study using a hermeneutical process for data collection and analysis of multiple, exploratory interviews. Thematic reduction was completed to explicate the fundamental structures of this particular relationship. Reduction of individually situated themes resulted in seven shared meta-themes including from task to connection; unnerving messaging; we are one; the freedom of unconditional acceptance; attuning and opening; atoning for the past, one moment at a time; and humanizing the inhumane. RESULTS: Nine cancer care nurses participated. Reconstitution of data and reflective writing suggested that the essential meaning of the AI patient-cancer care nurse relationship was expressed in contradictory yet simultaneous patterns for nurses. Nurses sought synchronicity with their AI patients despite their contextual differences and similarities, yet most lacked adequate cultural safety training. Being in relationship provided nurses great purpose within the universal human context of caring. CONCLUSIONS: Results contribute to the development of interventions designed to improve both the AI cancer care experience and the support and training of nurses. The mutually dependent nature of the patient-nurse relationship implies that strengthening and improving support for one entity may in turn positively impact the other.
American Indians (AIs) in the United States comprise a small but incredibly diverse
ethnic-racial minority population (U.S. Department of Health and Human Services Office of Minority Health,
2015). Approximately 5 million people identify as AI alone or in combination with
other races, with the vast majority residing in the lower 48 states (U.S. Census Bureau,
2012). Among numerous other persistent health inequities, AIs experience a cancer
inequity primarily comprised of elevated morbidity and mortality despite an overall
lower incidence rate compared to all other races combined (Burwell, McSwain, Frazier, & Greenway,
2014). Disproportionate cancer morbidity and mortality among AI populations are
often attributed to lower screening uptake, later stage diagnosis, increased treatment
complications, and worse overall outcomes (Cobb, Wingo, & Edwards, 2008; Guadagnolo et al., 2009; Vasilevska, Ross, Gesink, &
Fisman, 2012; White
et al., 2014).Cancer care nurses play a pivotal role in patient experiences and outcomes. Cancer care
creates scenarios where nurses act in a prominent capacity as supporters and advocates
for patients (Hildebrandt,
2012; Potter et al.,
2013). However, the establishment of caring relationships in the cancer care
setting is particularly challenging for nurses who engage with racial-ethnic minority
populations such as AIs as they contend with cultural and contextual influences
different from those found in the majority population (Alpers & Hansson, 2014; Kelly & Minty, 2007; Koithan & Farrell, 2010;
Murphy & Clark,
1993). Taking into account that over 80% of nurses in the United States
self-identify as non-Hispanic White, the likelihood of patient–provider racial and
cultural discordance occurring for minority patients such as AIs is significant and
linked to poor communication and worse patient outcomes overall (Lamb et al., 2011; National Council of State Boards of Nursing,
2015; Stone &
Moskowitz, 2011). How this discordance plays out for nurses and their
perception of relationship with patients is largely unknown.
Literature Review
Effective cancer care requires caring patient–provider relationships, yet the
literature suggests that AIs describe significant issues specifically related to
providers throughout the health-care experience including ineffectual
communication tactics, cultural insensitivity, perceived discrimination, and
aggressive or dominating approaches to care delivery (Guadagnolo et al., 2009; Vasilevska et al.,
2012; Walls,
Gonzalez, Gladney, & Onello, 2015; Warne, Kaur, & Perdue, 2012). Over
a third of AIs report experiencing some form of racially based microaggression
from a health-care provider, resulting in chronic health condition symptom
exacerbation and increased hospitalizations (Walls et al., 2015).For providers such as nurses, care of AIs presents language and other types of
nonverbal communication challenges coupled with conflict surrounding treatment
philosophies and discordant interpretations of wellness and disease (Guadagnolo et al., 2009;
Koithan & Farrell,
2010; Lowe &
Struthers, 2001). These contextual considerations undoubtedly impact
the development of authentic, effective, and mutually beneficial patient–nurse
relationships during care. Nurses may be failing to facilitate timely and
culturally safe cancer care among AI populations, and thus are unintentionally
contributing to the ongoing cancer care inequity (Lowe & Struthers, 2001; Warne et al., 2012).
Although the underutilization, distrust, and dissatisfaction with cancer care
systems and providers is well-documented for AIs, there is a dearth of
literature describing nurses' interpretations or perceptions of caring for AI
patients. The unique relationships that develop while providing cancer care to
AI patients and the underlying meaning that nurses ascribed to these experiences
remain unexplored.
Purpose and Objectives
The purpose of this study was to describe the meaning of the AI patient–cancer
care nurse relationship from nurses' perspectives. The study included three
objectives: (a) to describe the immediate experiences of nurses that have
engaged in cancer care relationships with AI patients, (b) to identify the
underlying structures of the AI patient–cancer care nurse relationship as
described by nurses, and (c) to interpret the meaning of the patient–nurse
relationship within the context of AI cancer experiences.
Methods
Design
The research focus was congruent with the philosophical and methodological
positioning of interpretive phenomenology, an approach that seeks to uncover and
find meaning in abstract yet everyday occurrences, particularly those that are
the most familiar and taken for granted such as human-to-human relationships
(Crotty, 1996;
Van Manen, 1990,
2011). The
investigation into the lived experiences and reconstituted meaning for cancer
care nurses serving AI patients were guided by Van Manen's (1990) methods of
phenomenological inquiry. This study used a nonlinear, iterative process during
data collection and analysis. This process reflects utilization of the
hermeneutic circle of data collection-reflection-analysis-meaning making that is
central to the phenomenological approach and philosophy (Reiners, 2012).
Research Question
This study explored and described the unique relationships that developed while
providing cancer care to AI patients and the situated meaning that nurses
ascribed to these experiences utilizing the research question “what is the
meaning of the AI patient–cancer care nurse relationship from nurses'
perspectives?”
Sample
Between January and May of 2016, a convenience sample for this study consisting
of 10 Registered Nurses (RNs) living in the southwestern United States and
meeting the inclusion criteria agreed to participate. One participant was lost
to attrition resulting in a final sample of nine RNs. Participants were
recruited via e-mail and word-of-mouth using professional and academic networks
and in collaboration with two research mentors, one of whom identifies as AI.
Inclusion criteria were RNs (a) with at least 3 years of experience in providing
cancer care to AI patients within the past decade; (b) ability to read and speak
English fluently; (c) willingness and capacity to engage in repeated interview
sessions over a 9-month period, including the ability to engage in
self-reflection and critical dialogue; and (d) with access to a working
telephone. Exclusion criteria were (a) RNs who were terminated from their work
with AI patients for any reason and (b) RNs under the age of 21, who potentially
lacked sufficient clinical experience to draw upon in order to engage in the
exhaustive interviewing required by interpretive phenomenology.
Institutional Review Board Approval
The study received human subjects' approval from the institutional review board
of the University of Arizona (#1512281830). Participants were informed both
verbally and in written form that their participation was voluntary and
confidential, and that they could terminate their participation at any time
without providing an explanation. Informed written consent was signed at the
start of the first interview with participants retaining a signed copy.
Demographic data received a numerical identifier. Participants were assured that
any identifying information revealed in the course of the interviews such as
patient diagnosis, place names, or tribal affiliations would be redacted or
altered during transcription so as to be unrecognizable.
Data Collection and Analysis
Data collection and analysis procedures for the study intersected and were
largely dependent upon one another, thus are concurrently described. An
exploratory and hermeneutical interviewing strategy was utilized during repeated
one-on-one interviewing with the participants. Interviews lasting approximately
1 hour were conducted in chronological order for each individual participant and
not for the sample as a whole; this was both logistically convenient and in
alignment with the interpretive phenomenological method of maintaining focus on
the individual experience during the first phase of data collection (Van Manen, 1990).
Cross-comparison for the purposes of meaning-making did not occur until after
all interviews were collected and analyzed. The setting for all in-person
interviews was either a private location of the participant's choosing, such as
their home or personal office, or in a private meeting space at a public
university or library. All of the interviews were digitally audio-recorded,
immediately transcribed, and uploaded into ATLAS.ti (version 7.5) qualitative
software (Scientific
Software Development GmbH, 2016).
The first interview and exploratory analysis
The initial interview began with “what it was like” for participants
providing care to AI patients with cancer to begin grasping the basic
features of this particular relationship. Exploratory prompting was utilized
to elicit memories, sensations, and experiential accounts such as “describe
a time when you provided cancer care to an AI patient.” Although the
interviews were largely participant-directed, probing throughout the
interview series was based on the four phenomenological lifeworlds of
corporeality (lived body), spatiality (lived space), relationality (lived
human relations), and temporality (lived time) (Van Manen, 1990). Integration of
the phenomenological lifeworlds into thought-provoking probes facilitated
the later cocreation of meaning at the existential level (Crotty, 1996; Van Manen, 1990).
Examples of lifeworld-based probing are as follows: (a) Spatiality: What was
the environment like? How did that [described
feeling/sensation/experience/relationship] impact you spiritually? (b)
Temporality: How did it feel at that specific time? Describe how that
[feeling/sensation/experience/relationship] changed for you over time? (c)
Relationality: Describe your relationship with [a patient, family member,
etc.]. Who else was there? How were they involved? and (d) Corporeality:
What were you feeling physically when that happened? What was your physical
response, if any?At the conclusion of each initial interview, participants were prompted with
a specific thought-provoking question or statement to contemplate during the
interval between interviews (e.g., “Before our next interview, try and think
more deeply about … ”). This prompt emerged from the immediate data
collection session and was intended to stimulate the reflective process and
encourage thoughtfulness on the part of the participant prior to the next
meeting (Van Manen,
1990). Following the first and all subsequent interviews, the
following procedures were undertaken: (a) immediate reflective writing in a
journal to capture first impressions and to note embodied responses that
were not captured by the audio recording; (b) during the interim between
interviews, engagement in a period of contemplative dwelling with repeated
exposure to the transcribed interviews and the creation of reflective memos
exploring potential structures buried within the text; (c) tentative coding
of the emic data utilizing Van Manen's (1990)
wholistic/sententious, selective, and detailed approaches. For example,
entire passages, short phrases, and single words were all coded for
potential significance or for further exploration in future interviews; (d)
conscious refrainment from assigning any meaning to the participants'
recollections in an effort to remain open and accessible to their individual
experiences. Instead, continued reflective journaling was employed to
attenuate for the researcher's own inevitable musings; (e) regular
debriefing with a research mentor in order to explore tentative coding
patterns and to address assumptions and bias in an effort to prevent
premature closure; and (f) preparation of the next line of questioning for
each individual participant utilizing the emic coding and reflective text
from each previous interview.
The second interview and thematic analysis
The second interview was conducted either in-person or via telephone
depending upon the participant's location and preference. This interview
revisited what was recounted previously in an attempt to encourage
elaboration on any points of interest suggesting implicit meaning (Crotty, 1996; Van Manen, 1990).
Examples of questions that encouraged elaboration, clarification, and deeper
exploration into the nurses' experiences include the following: (a) When you
say [descriptor word], what do you mean by that? (b) In the last interview,
you spoke about [a described experience, feeling, relationship, etc.]. Can
you talk more about that and why you felt that way? (c) You seem
[descriptive or emotion-laden word] talking about it now; what were you
feeling when it happened? Where do you think that feeling arises from?Lifeworld-based probing and redirecting to tease out
potentially buried feelings surrounding the phenomenon of interest
continued; however, the interview remained open-ended and largely
participant-directed. Tentative thematic abstractions for each participant
were then created. This phase required a great deal of discussion and
collaboration with the research mentor, as is typical of the interpretive
phenomenological method in general. Despite the creation of tentative themes
for each participant, continued attention was given to refraining from
cross-participant comparisons. This period of analysis also attempted to
move beyond what had been previously relayed in the first two interviews to
explore what remained unspoken, and the next round of questioning for the
third interview was created to transition from the concrete to the abstract
through confirmation and exploration of the various themes and the overall
potential meaning for each participant (Van Manen, 1990).
The third interview and confirmatory analysis
The third interview delved more deeply into previously described sensations,
embodied perceptions, and the possible situated meaning for each
participant. Compiled results from the first two interviews were presented
to each participant with the opportunity for confirmation, elaboration,
refinement, and discussion of themes (Parse et al., 1985; Van Manen, 1990).
This approach encouraged probing of the individual variations within the
phenomenon with each participant, allowing for a creative and open method of
exploring consciousness and understanding (Parse et al., 1985). During this
final interview, participants were encouraged to intensely reflect upon
their experiences of providing cancer care to AI patients.At this point, themes and emic coding patterns among participants became
repetitive. This was further confirmed with the research mentor during
debriefing sessions and during random transcript checking. When new
sensations or contradictions emerged, they were viewed as relevant and
integrated into the preliminary analysis. Completion of the final set of
interviews resulted in multiple revisions of the individually situated
themes to accurately capture the highly personal and often deeply embedded
nature of nurses' relationships with AI cancer patients.
Postdata Collection Analytical Procedures
Analytical procedures for the first research aim included (a) final adjustments
to the individual themes based on a period of contemplative dwelling with the
data, debriefing sessions, and insight gleaned during reflective writing; and
(b) considering each participant's experience as a whole and creating a
wholistic/sententious description to reflect how this individual's lived
experience contributed to the overall phenomenon.No amount of codification or theme abstraction alone can produce phenomenological
understanding; meaning occurs during the cocreation and transformation of text
and is reflected in phenomenological tone throughout the study, especially
during reflective writing (Van Manen, 1990). Thus, numerous drafts of the individually situated
themes and wholistic/sententious descriptions were required to reach this level
of thoughtful, contemplative text surrounding individual participant's
experiences.Analytical procedures for the second research aim entailed: (a) looking across
individual participants in order to compare and contrast their experiences and
to identify the underlying structures of the phenomenon, (b) reduction of a
total of 36 individual themes into a set of seven thematic descriptions
capturing commonalities and patterns seen across the sample, (c) composing each
thematic description to begin with “Relationship is … ” to reflect the unique
attributes of the phenomenon under investigation, (d) distilling the thematic
descriptions further into seven accompanying meta-themes from which a general
structural description could be created, and (e) constructing a general
structural description that explicated the shared experiences across the sample
at the experiential level. Although meaning occasionally subtly emerged,
incorporating researcher interpretations into the text was avoided in order to
authentically represent the participants' shared experiences.Finally, the essential meaning of the phenomenon was explicated in a
phenomenologically sensitive paragraph to fulfill the third research aim of
interpreting the meaning of the AI patient–cancer care nurse relationship. This
process delineates interpretive phenomenology from other approaches, as it
requires the integration of the researcher's reflections into the meaning for
nurses who are engaged in this unique caring relationship with AIs. It
positioned the researcher at the center of the phenomenon rather than as a
peripheral observer through the reconstitution of shared meaning into a
universally recognizable text (Crotty, 1996; Van Manen, 1990).
Methodological Rigor
Assuring rigor in interpretive phenomenology requires that the interpretive
process is conducted in a vigilant, thorough, and deliberate manner and that
emergent patterns appear coherent and logical (Laverty, 2003; Van Manen, 1990). Trustworthiness for
this study was established through an obvious sense of coherence between the
aims and the findings with verbatim recordings, transcription, and emic quotes
to support the analysis and tentative conclusions (Koch & Harrington, 1988; Van Manen, 1990). An
easily traceable paper and decision trail was maintained using the debriefing
notes and Atlas.ti (version 7.5) software (Scientific Software Development GmbH,
2016). To ensure reflexivity, written memos after each interview and
a detailed journal were deliberately maintained. Regular debriefings with a
research mentor contributed to the avoidance of premature closure and the
reduction of bias (Koch
& Harrington, 1988; Van Manen, 2014). Prolonged engagement
and triangulation of data assisted in establishing credibility. Both typical and
atypical findings were acknowledged and integrated into the findings. Regarding
transferability, the results from this study should resonate with readers and
appear valid, useful, and meaningful (Van Manen, 1990). Findings are not
intended to be generalizable in interpretive phenomenological research (Crotty, 1996).
Researcher positioning
Prior to engaging in data collection with study participants, the researcher
engaged in an extensive process of self-reflection under the guidance of a
research mentor as is consistent with the interpretive phenomenological
methodology (Koch &
Harrington, 1988; Laverty, 2003; Van Manen, 2014).
This reflexive practice is not only required of the chosen methodology but
was especially important due to the researcher's positioning in relation to
the phenomenon of focus having worked as a nurse both on and off of AI lands
in the southwestern United States for approximately 8 years. During this
time, regular contact with AI patients with cancer occurred, causing
significant impact both personally and professionally. Systematic inequities
and inimitable biases that colored the patient–nurse relationship arose that
had previously been taken-for-granted. Although working with AI patients and
communities was highly fulfilling in many ways, a deep-seated sense of
injustice and even discomfort with the researcher's identity as a
non-Hispanic White nurse emanating from a settler colonial context and
system began to emerge. Yet, close relationships with patients, fellow
nurses, and other colleagues identifying as AI played a key role in
providing encouragement to explore the phenomenon of focus in this study.
The guided self-reflection was critical in nature, uncovering deeply held
assumptions and interpretations of events. The outcome was a heightened
receptivity and sensitively to later data collection and analysis procedures
that were reintegrated into the findings to strengthen the overall study
(Laverty,
2003).
Results
Although all nine participants self-identified as female, they represented a variety
of ages and racial affiliations in addition to wide diversity in their professional
cancer care nursing experiences (see Table 1).
Table 1.
Sample Characteristics.
Age
Range (in years) 25–71
Mean (in years) 45
Gender
Female
9
Self-described race and/or ethnicity
White (non-Hispanic)
6
Native Hawaiian or Pacific Islander
1
American Indian or Alaska Native
2
Total years in nursing
Range (in years)
Mean (in years)
3–34
18
Types of cancer care nursing[a] with regular contact[b] with AI patients
Medical-surgical oncology (inpatient)
4
Medical-surgical oncology (outpatient)
4
Case management/care coordination
3
Combined years of cancer care nursing with
regular contact[b] with AI patients
Range (in years)
Mean (in years)
3–34
12
Note. AI = American Indian.
Participants selected all types of cancer care in which they had
regular contact with AI patients.
Regular contact was specified as caring for at least one AI patient
with cancer per month.
Sample Characteristics.Note. AI = American Indian.Participants selected all types of cancer care in which they had
regular contact with AI patients.Regular contact was specified as caring for at least one AI patient
with cancer per month.
Research Question Results
Engaging in the hermeneutical analysis process resulted in seven meta-themes:
from task to connection; unnerving messaging; we are one; the freedom of
unconditional acceptance; attuning and opening; atoning for the past, one moment
at a time; and humanizing the inhumane. Meta-themes are explicated through a
general structural description, and a meaning-infused essential description
revealing the depth and complexity of this relationship phenomenon. Each
meta-theme in the structural description begins with a thematic description
explicating what this relationship is from the nurses' standpoint. Emic quotes
are attributed to each participant, interview, and transcript section. For
example, P6-1, 237 indicates Participant 6, Interview 1, and Section 237 of the
transcript.
From task to connection
Relationship is paramount for nurses to transform nursing
care into authentic caring.
Relationship is not necessary for engaging in the work of nursing, but it is
deeply desired by cancer care nurses to feel a sense of fulfillment and
purpose. When nurses establish an open, comforting, and compassionate
relationship with AI patients, they feel as if they are being virtuous and
ideal nurses. Once you “start the relationship, then I think they start
trusting you, and then the relationship just grows,” illustrating the
inter-reliance between trust and relationship, which then creates space for
caring to take place (P4-3, 139). AI nurses inherently understand the
centrality of relationship and also express a feeling of being appreciated
within their relationship with AI patients: “I think they’ve [AI cancer
patients] learned to appreciate the relationship we have … they'll let me
know, ‘Thank you’” (P8-2, 583).Without relationship, nurses are relegated to engaging in surface-level
conversation and only the slightest, most necessary touch. Their work as
nurses has no meaning and is simply an unfulfilling “task” to be performed
wherein the nurse feels like a “robot” (P5-3, 230). It is degrading,
draining, and unsustainable. When relationship does not occur, nurses “feel
frustrated and then sorry at the same time,” and pangs of regret and failure
cling to them long after the patient has gone (P6-2, 76). It represents a
missed opportunity for caring, regardless of whether the impetus to do so
was professional, personal, or both.
Unnerving messaging
Relationship is thwarted by an inability to read verbal and nonverbal cues
expressed by AI patients. When nurses are unable to interpret AI patients'
often subtle messaging, it causes nurses to feel disconnected from the
patient and to doubt their clinical competence:The formation of relationships partially relies on the ability
to read the patient, but when this ability is inhibited by
the patient's muted or unexpected signals, it is unsettling and often vexing
for the nurse. “If you do try talking, you're met with silence … I go in
with a shut-down expectation …” and “I just don't seem to have any sort of
way of making that connection, that spark” (P5-2, 171). When nurses
encounter AI patients exhibiting “blank stares and sometimes not even
acknowledging that I had spoken,” they find themselves lost in a sea of
uncertainty and confusion, struggling to make sense of the situation and to
regain meaning and purpose in order to reconnect with what drives them to
continue caring (P1-1, 36).I feel more distant from the [AI cancer] patient. It's harder for me
to relate to them. I feel that when it's harder for me to relate and
connect to them, it's harder to read their symptoms and do my job to
help keep them comfortable. (P1-3, 144)For AI nurses, the messaging is familiar and decipherable. They use both
verbal and nonverbal tactics to facilitate connection, hope, and
partnership, and do not need to spend precious time breaking the code
between patient and nurse. By “taking their hands … right away, they feel,
as a group, you're connected” (P2-3, 169). Their relationships with AI
patients are imbued with both spoken and unspoken meaning that is understood
at an almost instantaneous and intrinsic level.
We are one
Relationship deepens when nurses recognize self in the patient (and patient
in nurse) regardless of contextual differences. When a nurse looks into her
AI patient's eyes and sees herself, she is able to transcend the barriers
and differences between them. When nurses allow it, relationship becomes a
way to honor our sacred connection to one another. Nurses imagine that
patients also see themselves in their eyes, creating a sense of reciprocity,
indivisibility, and exchange: “They're looking at themselves in my eyes when
we look at each other … What's the difference? It's nothing” (P3-2, 862).
This sense of oneness also creates an obligation to provide care in a manner
that nurses would like to be cared for, should they ever require it. For AI
nurses, recognition is immediate and infused with understanding; there is a
primordial and deep connection between many AI people. When AI nurses look
at their AI patients, there is a distinct sense of being in the right place,
at the right time, doing the right work. Recognition contributes to the
patient feeling comfortable as “they feel safe with their own people,”
illustrating the powerful sense of mutuality experienced by those sharing
heritage and identity (P8-1, 433).When AI patients feel unrecognizable to nurses, it creates alienation and
othering, as if “you're taking care of someone from a
different country” (P5-1, 108). There “is a wall in between me and them that
you can't really—of course you can't see, but you can't even figure out
really sometimes how to break it down” (P5-3, 3). This focus on separateness
impedes the relationship and perpetuates a sensation of distance between
patient and nurse, twisting the meaning of the relationship into something
unrewarding and estranging.
The freedom of unconditional acceptance
Relationship is facilitated by removing bias, assumption, and judgment and
finding neutral ground for caring to take place. Relinquishing these
obstructions caused one nurse to reflect, “I noticed that I had a few
judgments of my own when I first started working with the [AI] population …
I understand that now. It's just definitely opened my mind to see my
blindness” (P7-3, 12). This transformation takes time, self-awareness, and a
commitment to change from nurses, but the rewards are realized in a palpable
strengthening of relationships. Relationships also become exponentially more
fulfilling and even freeing as inhibitions are stripped away in favor of
unrestrained acceptance of the patient by the nurse. However, an inability
by nurses to release assumption or bias creates stunted relationships with
the potential for fallacy:The nurse enters into the relationship anticipating
disappointment and irritation, and any chance for “meeting in the middle
respectfully” is dashed (P6-2, 146). Nurse and patient are closed off and
isolated from one another in this scenario, like two ships passing in the
night.When you know you're going to have [an AI] patient I think that you
have an idea or an image that forms in your mind, like a preexisting
idea of how this person is going to be … whether or not that's true.
(P5-1, 112)
Attuning and opening
Relationship is a process of attuning to the AI patient in every dimension by
becoming receptive to a new way of being. Attuning to patients requires that
nurses speak less and listen more; mirror the patient's preferred (and often
slower) pace instead of marching forward expediently with the demands of the
health-care system; and relinquishing expectations in favor of honoring the
patient's preferences for care. These practices often came quite easily to
the AI nurses, but for non-AI nurses a unique attunement is required with AI
patients due to cultural variations, calling for a heightened sensitivity
and a willingness to learn. Attunement is fundamentally embedded in the
ability of nurses to respond authentically and benevolently to AI patients
despite their own preconceptions. This requires a conscious act of
relinquishing control over both the patient and the situation, a difficult
task within the often urgent and regimented cancer care world:Being attuned to AI patients gives the relationship great
meaning for nurses by creating a sense of collaboration and synchronicity.
Feeling out of tune with AI patients fosters a dichotomous and superficial
approach to care as if, “you're coming from this direction, they're coming
from that direction” and like “you're taking care of somebody on the surface
… you're taking care of their needs, or their problems, in that exact
moment, but you haven't really made a connection or an impact” (P5-2, 145
and 127). This feels radically unsatisfying for nurses, yet they know that
attunement often takes time and attention: “I think in my listening, my
ability to care for her at several different times … we [eventually]
connected because of my openness in wanting to learn, and then wanting to
care for her however she wanted to be cared for” (P9-2, 63). There is an
element of deference in this type of caregiving that stands out.[AIs] don't expect things to happen quickly, or they don't expect
immediate results … [They are] culturally different, and so that
urgency isn't in them. They'll come maybe, and they'll get treated,
but all in their own time, which is okay—I think something that I've
learned is that it is okay. (P6-2, 142)
Atoning for the past, one moment at a time
Relationship is a means for honoring the struggles of AI peoples through the
easing of suffering, even if only momentarily. The verb
honor is derived from the Latin
honorem, meaning to show respect or reverence.
Essentially, approaching the relationship from this perspective creates
opportunities for nurses to facilitate both personal (immediate) and
collective (historical) healing. “A lot of patients don't realize that they
are strong,” yet nurses are in a position to recognize this resiliency and
to support it wholly (P8-2, 413). They are acutely aware of the substantial
barriers and systemic complexities their AI patients' encounter while
seeking cancer care: “When you realize whatever it took to get down here
[for treatment] or what they've been through before, it's humbling” (P6-3,
121). Threaded throughout many of the relationships is a strong sense of
past injustices committed by non-AIs against AIs; these historical
violations infiltrate present interactions in subtle yet insidious ways.
“It's difficult to touch someone in an atmosphere of distrust,” and this may
also mean that “you're trying to make up for things that have happened in
the past” during present-day cancer care (P9-1, 1005; P6-3, 5). Although the
past is unchangeable, many nurses felt compelled to use the present time to
restore trust between AI patients and cancer care systems and providers. For
AI nurses, the past is implicit between themselves and their AI patients:
“You understand each other and the history and your roots … I think most
Natives have that deep understanding … I think that deepens the connection
[between us], knowing the history” (P2-3, 31).When relationships fall short, “it makes me sad because especially in the
cancer business by the time it is figured out, it's a lot farther than it
[should] have been” (P6-1, 63). Patients may be “resentful” when they don't
feel respected, which in turn “clouds their judgment” about continuing care
and perpetuates the historical pattern of disengagement from health-care
services and providers (P4-3, 187). Nurses use relationship as an implement
for reducing the cancer care inequity, one patient at a time; a relationship
comprised of respect and parity may literally save a patient's life. For
many nurses who feel that they are often the face of a dysfunctional
health-care system, relationships are the most salient tool they have to
counter four centuries of inequity within AI health care.
Humanizing the inhumane
Relationship is a conduit between the biomedical cancer care and AI worlds.
It serves as a channel between “crisp, clean and regimented” allopathic care
and more nuanced, complex AI patterns of health and well-being (P9-2, 1029).
As humans, we are always within our bodies, and nurses become the human
image of cancer care through their “caring eyes” “positive” touch, and
simple presence (P6-1, 239; P9-1, 1033). They often act as “the mediator,
the middle person” between patients and families, physicians, and systems
(P8-2, 461). Uniquely, AI nurses reside within their patients' worlds,
permitting them both a distinctive vantage point and attenuating the
taken-for-granted nature of perception: “You think about these patients who
come from the reservation and they come to the cancer center and it's a
whole new environment” and “It helps me in that I understand both worlds and
I don't take anything for granted” (P8-1, 433 and 489). The enclosed
sterility of the cancer care world is potentially harmful to AI patients'
healing: “It's not good for their spirit or their emotions, just to focus on
only their physical [health]” and AIs “need to touch ground, and they're not
touching the ground” in the biomedical setting (P9-1, 749 and 757).
Connecting with nature is another basic feature of being human, and cancer
care nurses recognize this even within their own grief process following the
loss of a patient: “I kept looking outside and I wanted to see the sun … It
feels so dark inside of you” (P2-2, 27).When nurses feel nameless and faceless to their patients within the cancer
care world, it is dehumanizing. The sheer amount of time and persistence it
takes to earn the trust of AI patients and to reach a point of familiarity
and ease is exhausting, and some nurses never reach that point. It is
disappointing and calls into question their bearing and purpose as nurses:To be human is to have a name and to be recognized by other
humans. When this fails to happen, it has implications for the meaning of
the relationship between AI patient and cancer care nurse as it casts
shadows of doubt on the depth of their shared connection at the most
fundamental level.I thought maybe she would even recognize my face, [but] when I have
spent a significant amount of time with somebody for them to not
even have facial recognition … I mean if they don't remember my name
that's one thing, but that she didn't even recognize my face was
surprising. After all that time we spent together in comparison to
other interactions with other patients who not only remember my face
but know my name … (P1-3, 73)
Essential Meaning
The nurses' meaning of the AI patient–cancer care nurse relationship is expressed
as contradictory yet simultaneous patterns of joy and sorrow, ease and
difficulty, and obligation and vocation. It is challenging, often vexing, and
sometimes heart wrenching; yet these relationships are also rewarding,
inspiring, and humbling. From one moment to the next, nurses seek synchronicity
with their patient as they dance to a life rhythm that reveals and conceals,
enables and limits, and connects and separates. Being in relationship with AI
patients gives cancer care nurses great purpose within the universal human
experience of suffering and healing.
Discussion
Meaning for cancer care nurses serving AI patients was expressed as opposing yet
coexisting experiences. These paradoxical sensations were emblematic of Parse's
human becoming paradigm in which human rhythmicity allows two people to continuously
move with and apart from one another over time (Parse, 2014). In many ways, the meaning for
nurses in this study was located somewhere along this continuum and within this
enigma, palpable yet elusive.What these relationships meant to nurses was revealed in the “imaging and valuing” of
their language (Parse,
2014, p. 37). Their words formed descriptions that exposed the
multifarious and fluctuating nature of engaging in a deeply personal relationship
with AI patients who felt familiar and unknown, receptive and impervious, and
predictable and volatile. These contradictions may be a universal experience of
nursing, part and parcel of the unpredictability of human beings that is potentially
amplified during times of intense interfacing. The typically prolonged nature of
cancer care adds yet another element to this nursing experience as relationships
have the opportunity to become enduring yet undulating.AI patients with cancer posed a challenge for many nurses in that their very way of
being within the world felt distinctly different than the biomedical-allopathic (and
mostly White) paradigm that nurses and nursing emanate from (Hall, 1999; Mohammed, 2006; National Council of State Boards of Nursing,
2015). The AI nurses and the additional racial minority nurse in this
study more easily identified and named the experience of being in relationship with
a fellow person of color. There was a sensed solidarity present in the recounting of
their relationships with patients that was noticeably absent from the rest of the
non-Hispanic White participants. Among the sampled nurses, the ability to seize upon
similarities while embracing differences between self and the AI patient seemed to
be deeply connected to overall fulfillment and sense of purpose within the
relationship. Those nurses who were unable to envision any piece of themselves in
their patients found the relationship reduced to one of task performance and
superficial interactions that left them emotionally fatigued and longing for
meaning.Many of the nurses felt painfully unprepared to work with AI populations, reflecting
a general absence of AI-specific cultural safety information in both their pre- and
post-licensure training, which is supported in the literature (Alpers & Hanssen, 2014). The persistent
dominance of White European-Anglo neo-colonial structures in nursing practice,
education, and research and our failure as a nation to reconcile our uncomfortable
history with AI peoples (Hall,
1999; Lowe &
Struthers, 2001; Mohammed, 2006) subtly but consistently emerged in the data. A painful
historical past seemed to linger within their present-day encounters, and nearly all
the nurses sought to soften and humanize cancer care as a means of honoring and even
atoning for this unique aspect of their AI patients' lives. All of the nurses in
this study relayed the need for adjusting and attuning their patterns of clinical
practice to reflect their patients' (sometimes unfamiliar) verbal and bodily
messaging. Many became more adept at this over time and came to appreciate a slower
paced, quieter, and deeply respectful approach to providing cancer care. They found
great meaning and purpose in relationships emergent from the confluence of patient
and nurse who successfully transcended time, differences, and idiosyncrasies.
Strengths and Limitations
This study represents the first known in-depth exploration of nurses' experiences
of caring for AI patients with cancer. Although the persistent cancer inequity
and problematic interactions with the health-care system are well-documented
among this unique population, examining the issue from the perspective of cancer
care nurses is both novel as well as required to truly address the care inequity
from a reconciliatory and patient-centered approach.Although typical of the interpretive phenomenological method, a sample size of
nine participants does present limitations in regard to diversity and
representativeness of the phenomenon under investigation. For example, the
sample for this study lacked any participants identifying as male and was
largely dominated by non-Hispanic White middle-aged females, which potentially
skews the perspective of what it is like to care for racial-ethnic minority
cancer patients. In addition, only one of the participants in this study
actually provided cancer care in an AI community, potentially skewing the
essential meaning to some degree. All other participants provided care at
facilities adjacent to or sometimes far removed from AI communities. Although
this situation is emblematic of cancer care being centralized in more urban
areas in the U.S., it is possible that the experiences of nurses who reside
within AI communities may be markedly different than those who live and work in
areas dominated by non-AI populations. In addition, patient–nurse relationships
are comprised of a two-way exchange and certainly the AI portion of this dynamic
is equally worthy of inquiry; however, a conscious decision was made to explore
what was most underrepresented in the literature.
Implications for Practice
This study has several implications for cancer care nursing practice. First,
illumination of the nuances of the essential AI patient–nurse relationship
embedded in the cancer care process will contribute to the development of
interventions designed to improve the patient experience. This may in turn
promote earlier entry into cancer prevention and screening systems for AIs and
enhance treatment partnerships, resulting in decreased mortality and morbidity.
Second, understanding the meaning of cancer care relationships for nurses
working with AI patients and communities may assist in developing improved
methods of support and training for nurses. Adequate support and training for
health-care providers is associated with greater job retention, increased
compassion, and the delivery of high quality and culturally safe care (Alpers & Hanssen,
2014; Hildebrandt,
2012; Kelly &
Minty, 2007; Stone & Moskowitz, 2011). Although the concept of cultural
safety (as opposed to cultural competency, humility, or sensitivity, for
example) is still gaining traction in U.S. health-care systems, a brief foray
into the training of nurses in countries with significant numbers of Indigenous
patient populations such as New Zealand or Canada reveals a markedly different
approach to establishing patient–nurse relationships (Aboriginal Nurses Association of Canada,
2009; Nursing
Council of New Zealand, 2011). The most resolute standard emanates
from the Nursing Council of New Zealand (2011, p. 7) who define culturally safe
nursing care as follows:This progressive interpretation moves beyond awareness,
sensitivity, and skill sets by allowing the recipient of care to define the type
of service and nature of the care relationship. This approach effectively places
the power back in the realm of those who are typically disempowered through the
provision of health care in colonized countries with remaining Indigenous
peoples, such as the U.S. (Hall, 1999; Mohammed, 2006). Comprehensive cultural
safety training for nurses who care for AI patients should be designed with this
framework in mind and requires active participation from nurses and authentic
collaboration with patients. At a fundamental level, the responsibility for
exposing nurses to cultural safety concepts and for supporting their endeavors
to provide this type of highly compassionate and versatile care resides with
nursing educators and leaders (Alpers & Hanssen, 2014). This
recognized gap was a reoccurring pattern among the participants in this
study.… the effective nursing practice of a person or family from another
culture, and is determined by that person or family. Culture includes,
but is not restricted to, age or generation; gender; sexual orientation;
occupation and socioeconomic status; ethnic origin or migrant
experience; religious or spiritual belief; and disability. The nurse
delivering the nursing service will have undertaken a process of
reflection on his or her own cultural identity and will recognise the
impact that his or her personal culture has on his or her professional
practice. Unsafe cultural practice comprises any action which
diminishes, demeans or disempowers the cultural identity and wellbeing
of an individual.Finally, the results of this study suggest that refinement of nursing praxis will
ultimately result in improved outcomes for both nurses and AI
patients, reflecting the inseparability of the two entities within the cancer
care relationship. The complimentary and mutually dependent nature of the
patient–nurse relationship implies that strengthening and improving support for
one entity may in turn positively impact the other (Raingruber & Robinson,
2009).
Conclusions
As nurses fulfilled their many roles within cancer care, they formed significant and
influential bonds with AI patients. From a cultural safety standpoint, the onus to
improve AI cancer care both systematically and at the individual-provider level
resides with the clinicians delivering the care. Yet nurses who serve AI patients
face unique challenges in the formation of meaningful and effective relationships
with their patients based on the deeply personal descriptions collected and
interpreted in this study. The philosophy and practice of interpretive phenomenology
suggests that what appears the most familiar to us is often the most elusive (Crotty, 1996; Van Manen, 1990). This
study represents the first step in a program of research aimed at fully illuminating
the AI–cancer care nurse relationship in an effort to improve experiences and
outcomes for both this complex population and the nurses who serve them.
Authors: B Ashleigh Guadagnolo; Kristin Cina; Petra Helbig; Kevin Molloy; Mary Reiner; E Francis Cook; Daniel G Petereit Journal: Public Health Rep Date: 2009 Jan-Feb Impact factor: 2.792